Category Archives: MS

The Awakening

A couple of days after my last post I found myself in the Emergency Room.

It was something I wasn’t expecting at all. Despite what I had written about a few days before, things had been relatively stable.

It was monday morning. I took 8 to school. I was in a good mood, a productive one. I took my iPad and phone up to my bed. I was sitting there making long needed appointments for the family. My cats were curled up near me. I was on hold with one doctor’s office. Suddenly something came over me. It was like a “whoosh” feeling that began from my head and went down to my toes. I couldn’t explain it then, I can’t explain it now.

As that happened I suddenly fell over to the left. My whole body just tilted over. The tremors began. I grabbed the side of the bed to keep myself steady. I was aware of what was going on, but I was terrified. My eyes wanted to close. I struggled to keep them open, and my head up. I was dizzy. Just trying to grab my phone to find someone, anyone, felt impossible. I cried. I tried calling my friend Jess. No answer. Then my mom. No answer. My husband. No answer. I managed to text my brother who would know where our mother was. Told him it was an emergency. He called me back. I explained what was happening. He told me she was out of town for a day. Something about Galena. Ok.

I told him I think it’s a seizure. Not sure. I’ve had this happen before the last couple of months. A couple of times. Not sure why or what they were.

Jess finds me first. She says she can be there in a half hour, she’s out. I call the doctor, talk to the nurse. She tells me she will not hang up until my friend gets there. We have a 30 minute conversation. In that time, I finally stop tremoring enough to lift my head. To walk downstairs. Husband calls and he immediately leaves work. Jess arrives.

The nurse told me to go to immediate care which I didn’t think twice about, but now disturbs me because with their limited ability to treat me whether it was a seizure or my MS, why would she not tell me to go to the ER? Because I went to the immediate care. They couldn’t do anything for me and within 45 minutes they sent me to the hospital. Where I spent the next five hours.

Tests. Tests after tests. The focus for some odd reason was on my chest. At one point the technician came to get me for a chest x-ray. Now here’s me, in a hospital bed, thinking either I had a seizure(as I had epilepsy as a child) or it was a rather odd & wicked MS exacerbation, and someone wants to take a picture of my chest? It made no sense. And as someone who has spent the majority of their whole life in and out of hospitals, I questioned it.

Later it turned out my blood tests showed mild clotting, which they then told me was also common in those of us with MS & other immune disorders. So then I spent nearly 2 hours taking in radioactive fumes via mouth to light up my lungs to check for a blood clot. Which was, surprise! Negative. I could have told them that and saved my insurance a lot of money.

I was discharged and told not to drive till I saw my neuro later that week. And when I saw her, she told me she didn’t think it was a seizure. Despite my mother sitting there saying that she dealt with my seizures for nearly 2 decades and my descriptions of what was happening was damn similar. The Neuro’s reasoning was that I wasn’t unconscious.

I have no words. So angry. I think I’ve read more about my type of seizures over the last 44 years(I developed them age 1, they slowed down by 20 with only two in my twenties that we know of) than she has. I recounted this whole visit to my father that day. And he said the same, ” you were NEVER unconscious during your seizures”. I knew this. They weren’t the typical. I lost faith in my Neuro that day.

We’re still not sure what’s going on. I’m noticing a pattern. I thought they were panic attacks. But I don’t think so anymore. It’s something else. The Neuro wants to think it’s a combination of MS and hormonal.

Whatever it is it threw a monkey wrench into my life this week making me feel as if I couldn’t even take care of my own family. My friends were amazing and I owe them everything. They took care of 8, picking her up and driving her everywhere when I was unable to drive. I don’t like asking anyone for anything so this was hard for me.

Next weekend I restart the Tecfidera. My mother told me after the Neuro’s appointment “You put everything off, to take care of everyone else. But now you’re seeing the end result. You’re actually getting sick. They need you here to take care of them, so it’s time. Take the meds, or you won’t be here for them “.

I’ve gone this long. Nearly 25 years with minimal medication. I’ve defeated so many odds according to the doctors over the years. But I’m no longer invincible, I’m not the superhero I thought I was.

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Here it Goes

The last few months have been eventful.

Or rather at the same time, not enough.

Not enough to write about.

I’ve preferred to keep them close to the chest. Too much pain and confusion. Too much hurt.

See, I’ve been going through the worst depression of my life. Yet, I’ve done little to deal with it.

By now most people would have been to see a doctor and had a prescription given to them I’m wary. While I know that some work and they certainly work for my son to a certain degree, I am also acutely aware of how I want to feel and after all these years of feeling pain & confusion I’m not ready to rid myself of those emotions.

I’ve preferred to spend the last few months drowning, but coping. Helping my kids deal with whatever they were going through at school academically and with their peers. Just trying to be there for my husband through very exhausting and stressful times at work.

Yet…

There has been the usual.

Of course.

My health issues are always here. They’ll never go away and sometimes they’ll get worse. And lately that’s been the case.

I do try to pretend they don’t exist. Hell this is what I’ve done for nearly two decades. Pretend they’re not here. However lately things have been an absolute mess and I know that they’re the reason for the increase in the depression/anxiety issues.

I could start with the disability filing.It’s exhausting. What you’re subjected to. How to explain to a psychologist in a very short amount of time how angry and miserable you are. And really, you don’t get that much of time to explain this.You don’t get to explain that you have decent days. However those good days are fleeting and you have several hours within those days without issue. But most of those days you’re so petrified of driving because your sight is a mess, and because well, you can’t explain why but you’re driving home from the grocery store & your chest constricts. And the next thing you know you’re gripping your steering wheel, you notice that your feet are tingling, your eyes want to close, you feel as if you can’t breathe.

And nothing you do can change this. You try to change the station on the radio, or you turn it off.

Silence often helps.

This is a panic/anxiety attack. This is what happens when after 20 + years of MS you’re terrified to get behind the wheel. When there are only certain roads you can drive without the fear and bile rising within your throat due the fact that when you took them before you had flares.

This is life with MS.

Or rather…this is just a snapshot. This is a snapshot of my life. My life which used to seem so easy. Which has become so complex that I’m afraid to drive outside of my comfort zone that consists of the several blocks around my house. This is where things get so painful.

Imagine trying to leave your house to run a simple errand only you just can’t. It’s near impossible without that strange feeling beginning in your throat and your chest. Lately hitting red lights sends me into an absolute panic. There are certain main roads around here where when at a red light you’re on an incline. Because of this I’ve figured out ways to get around them & take short cuts. Just to avoid being stuck in that position. Again, this is just a snapshot.

And why the denial for disability was so heartbreaking. I was thankful however when my attorney’s office explained that an initial denial was almost the normal & that we had to appeal. Just last week I filled out those papers and sent them in. Next week I meet with a psychiatrist for the first time. I’m at the point where I need to do something to relieve the fears & anxiety that have been such a huge part of who I’ve been lately. Or rather, a detrimental part.

During all this I was fighting with the insurance & the pharmacy regarding the dosage issue with my Tecfidera. In case you don’t remember, I was on it for a short while last summer. Then I had the side effects that no one was supposed to have. Or rather, just the small minority. As my neurologist has now realized, if it’s a minor side effect I’m going to have it. Such as my colon going into distress after a couple of days on the high dosage. I’ve been off for nearly a year. It took this long to get us to agree I need to be on SOMETHING. I no longer have a choice. My once extremely passive MS has suddenly decided it wants to torture me. Which also makes me want to kick myself many times for not fulfilling many life dreams ahead of time. I’m working on trying to get things accomplished before the MS decides to go even more ballistic.

To make a long(sorry, VERY long) story short, after several months of insurance fighting the prescription being lowered to just one 120 a day(which is minimal) to give me a chance to adjust, they finally gave in two weeks ago. To say this argument was draining would be an understatement. It was a good deal of my depression the last few months. I spent at least an hour a day on the phone daily for 4 months with insurance or my doctor’s office. Who knew going on a lower dose would be so trying.

Deep breathes.

Ok, so we’re here. It’s all done. Just need to continue with the disability hurdle.

There have been other things going on, but I refuse to make this “the most depressing blog post ever”.

I’ll save it for a couple of days from now. At least that will bring my average of posting up from every few months to every few days.

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Greetings & Salutations

It’s been a while. It’s a New Year.

I disappeared. I had to.

Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.

Last I wrote I talked of some health issues.

They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-

I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.

– 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.

– His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.

-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.

Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.

Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.

I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.

After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.

-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.

Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.

– I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.

Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.

Another day…Another Time.

For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.

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And in the End…

Last I wrote I had begun the medication and aside from the basic side effect of flushing & the fatigue which led to my dosage being lowered with the initial titration I was fine.
Then things changed swiftly. The first two days of the 240 dosage I was prepared for the worst, but it never occurred. The day after the first day was my daughter’s birthday party with her friends and we were taking the girls to a movie. It was within an hour of leaving the house that the first symptoms appeared. I felt nauseous & had to take a bag of animal crackers with me to keep myself from throwing up in the theater with five girls in tow. I made it through the movie and the rest of the party. However not long after everyone left I was curled up on the couch in the fetal position in pain. Later that night it passed and I made a point of going to bed earlier than normal so I could feel human.
Which the next day I did.

However that night I took my third 240. And within 2 hours something didn’t feel right. At first I blamed it on the really bad sangria I was drinking, which I had only had three sips of. However as things progressed, the night became worse. I couldn’t sleep, my stomach was in agony. My back was seizing. I spent the night feeling like hell, I didn’t sleep except for 45 minutes close to the time I needed to be up to get my daughter up for camp. I was hurting in a way I never felt before. The exhaustion was something I couldn’t deal with. I came home from dropping her off and fell asleep. But the pain woke me up again a short time later and at that point I called the doctor. I reached a nurse who after consulting the doctor called me back telling me that I needed to stop the Tecfidera immediately.

Now this is the first medication I had been on since my aborted attempts with the Avonex over 9 years ago. I had to go on this mainly because my eyesight has been the main failure with the MS after 25 of having it. I sometimes feel awful because I’m fully functional compared to so many of my peers. Sure I have moments, weeks even when I don’t think as well, or function as well as I should. But I know that I can run the trail with my dog or clean my house with abandon. And I feel guilty. I see and read the stories of those who can’t do half the things I can and I feel miserable.

However I spent so many years fighting this ridiculous illness and doing what I wanted because I knew that there would come a day that if I ever stopped fighting I would be succumbing to its hellish consequences. However since these initial feelings I’ve become connected with a community that has people who have progressed much further past what I could have ever thought. They feel the pain and limitation that I don’t have yet. And I say yet because there is always that chance. Someday it will, and might come. And probably will.

I knew it was bad that day when I called my husband at 2 pm in ridiculous tears. I couldn’t eat, lay down, sleep, stand up or breathe. He left work within 20 minutes and came home to me & to pick up our daughter from camp. He had never in all the years we were together heard me in this much pain. I couldn’t function. I wanted to soldier on. I knew that the drug was still new. Though it had been through trials it was still new. At least to the general population of MS patients. We’re the guinea pigs for our neurologists. As we go along dealing with this medication they’re learning about it. There are always certain side effects that are given however, this doesn’t cover the whole spectrum. There are always going to be side effects that occur that no one anticipated and others that reached a severity that wasn’t supposed to be documented.

But we’re the documentation.

The initial titration schedule with the Tecfidera goes as follows: 2 120mg a day for a week, after that one graduates to the 2 240 a day schedule. Now this is when things goes haywire for many. There are many that don’t feel the side effects after going through this change. There are quite a few who go through very severe GI side effects that choose to power through them no matter how long and hard they are. For some they last a few weeks, a few months.
There are those of us who look at this as being something that is non-negotiable. For me I spent that last 24 hrs of severe pain on the phone with my Neuro’s partner at 9 pm wondering what to do. He wanted me in the ER hooked up to an IV of a cocktail that would deal with the pain. I told him I had a chance to acquire an Ativan via my mother. Which is an anti-anxiety drug. He said “oh yes. Try that first, it might make the spasms subside. If they don’t, go to the hospital immediately.” By the time I called my mother back she was almost in my driveway. Within an hour of taking the Ativan I felt calmer. I still had the pain for three hrs afterwards. Then I slept for almost 8 hrs straight. And felt better.

The next day I felt a little better. I had more energy than I had the day the day before. My husband decided not to chance things, and called in to work explaining the situation. I left that afternoon to run an errand. That 40 minute errand proved to be the wrong move. A short time later we had to stop by my mother’s, then pick up our daughter from camp. By the time we arrived to my mother’s my insides dancing to that tune. I was in pain again. My mother put an ice pack on me when we arrived and while J went to get our daughter from camp I sat there with it on. By the time he returned back I felt much better. And as that night went on I felt even more so. I took another Attivan a few hours before bedtime. By morning I was a new person. Though by daytime I felt a little loopy. I felt stoned as evidenced by my conversation with my friend Jess. I sat in a parking lot talking to her laughing so hard she laughed. BUT I felt like ME again.

The next day the Dr. was finally back in the office and we talked about what to do. She admitted that what we needed to do was bring the titration schedule down to 1 120 a day for three months. Not everyone was responding well to this medication. It seemed that the schedule was not in tune with everyone’s GI systems. This was evidenced by what I had been seeing on this support group for the medication I was involved with. So many were reporting the same thing.

My family has this bizarre reaction with most medications. Particularly my mother’s side. We have what’s called “paradoxical” reactions. Our systems don’t match up to what we’re ingesting, and though the drug may cause only a few mild side effects it’s not uncommon for most of us to end up with the most extreme reaction on the first try. I’ve seen this happen with my mother, my brother, my aunt, and myself.

I can’t take a Tylenol sinus without falling asleep within two hours and staying asleep for nearly 16.

This has caused a conundrum for me when it comes to the caring & treating of this illness. This disease. I don’t know what to call it anymore. It’s just something that has made my life unusual & at times unbearable for well over two decades.
I will give myself a break( I have been this past week) and move on. I will restart the medication at slower dosage in a few weeks. Thankfully my doctor understood that I needed to take time off due to July being so busy.

I need to make clear here and now that not every medication comes with a warning label, and it doesn’t come with a label promising a cure. MS will not be cured. At least not for now. However with the rate things are going, I hope that perhaps some amazing discovery will occur that will lead a slowdown of symptoms and progression for those of us with this strange, and befuddling illness. I would honestly like to see a cure in my lifetime. I would like to prolong the inevitable. I would like to be able to see my children grow up, my grandchildren grow up, and the world evolve even more.

However our skepticism toward the medical industry needs to remain grounded & well fed only when necessary.

When something amazing presents itself, we need to grab onto it and give it a chance.

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The Simple Story

The adventure has begun. It began ten days ago on a sunday evening.

The little blue and white pills sat in their little black case waiting for me. The deal was that I would take them & they would slow down some of the symptoms and flares that had been taking place for a while. A long while. Way too long.

I stared it down. It didn’t move. It mocked me. I did what all the lovely people on the support group page told me to do. Take the 1 aspirin, eat, wait a little while, then take it with a lot of water. Enough water to keep a camel happy for a year. And I did most of that. Except take the pill part. Instead I stood there putting it in my mouth, taking it out, putting it in, taking it out. I was nervous. Terrified. I knew how much life would change. Then my 6 1/2 yr old piped up and told me to just take it “Do it for your health”. Who can argue with that? So I took it. And waited. For anything & everything. I was nervous so I walked around a bit. Cleaned a little. Then I remembered The Tonys were on and that took some of the worry away from me. Damn, Neil Patrick Harris should host all awards shows from now on. I really hope Tim Minchin wins a boatload of awards for Matilda. These thoughts kept me preoccupied. Then slowly but surely I was getting warmer. I couldn’t figure out what was up. I kept looking at the air conditioning system and adjusting it. Hmm It was 72. Why am I so hot? Took off my t-shirt & threw on a tank top. Husband & I sat down to watch Mad Men.

A short time later I was burning. The skin on my arms and chest were bright red & blotchy. It hurt. It was absolutely horrible, this was a worse feeling then giving birth. Which sounds silly but it was. I kept jumping up and down making these pitiful whining noises. A red rash popped up all over my arms, chest & legs. It hurt to walk. The feeling of fabric against my legs was torture. My husband tried to calm me down but that seemed to make matters worse, as I was in a heightened state. I quickly grabbed a wet towel and applied it everywhere. That seemed to take some of the stinging feeling away. I guzzled 5 glasses of water & took to the boards to the support group for advice. Thankfully the advice was much of what I was doing. Drinking 8 glasses of water seemed to bring it all down. Within an hour the flushing had subsided, however my legs still felt prickly & would remain so through most of the night.

This was my first dose. The next day went fine. Morning & evening went off without a hitch. No side effects. However tuesday morning was a different story. I took the medication & within 2 hrs I could feel something. I was a little dizzy, felt a little tired. More then normal. I was getting ready to take the kids to the local mall. I had promised them, they were excited to go use some gift cards. But within a mile from home I sensed the change. I was dizzier, and my eyes felt like rocks. My body suddenly felt like a paperweight. I could barely stay awake or feel anything. I made it another quarter mile to the local McDonald’s and grabbed food. Pulled over and the kids ate. I started tremoring. My left arm. Always my left arm. I argued with my mother who told me that it would pass. But I was terrified. I took a deep breath and decided to turn around and go home. I made it home and immediately came in and climbed upon the couch. I was tired. Oh so tired. I drank a huge diet coke to try and get some caffeine in my system. It’s not the best choice but I knew it would help me stay awake. Thankfully C is old enough to watch over his sister so I could try and get back to me. I did eventually feel ok. I had a second wind late at night with the night dose.

Which made me wonder if there was something to the way I was taking them. The first dose was a night dose & I had some energy with it. Morning doses seemed to make me a little sleepy, rinse lather & repeat. This went on the next day. And the following day thursday was the worst. I could barely function. It started with an argument with my contractor who basically went back on most of his word regarding fixing a huge issue his former company caused & screamed at me on the phone(my husband is still planning on dealing with him soon for that one). I was shaking. Then a family issue that had been going on was giving me such stress that my mother finally forbid my sister to talk to me about it & said that she wouldn’t talk to me about it either until things settled. I was that much of a mess.

It was by early afternoon when she called to check on me again & I could barely lift my head to the phone, and my words were slurring as if I drank a bottle of whiskey my mom knew something was wrong. She came and picked up E. She had her stay with her until J could pick her up on his way home from work. She even sent my stepfather over with a pizza for me and C. During this time I took to the phone and called my neuro. I told the nurse what was happening and when the Doctor called me back a short time later she said to just take one pill a day at night from here on out. Even when the dosage goes up to the 240. I did as she said and the next day I felt myself. I even made it to the mall with the kids. They had the best day. I even overcame my fear of drinking with this med thanks to some encouragement my by new friends in the group who were experts on the matter, and felt just fine. In fact the pill seems to go down better when an hour later you follow it up with a glass of wine.

This week I’ve been fine with the medication. Which is a far cry from my days with Avonex. I officially apologize to my husband Josh & to my ex/friend Matt for everything I put them through when they had to administer that bitch of a drug to me, and the anger I exploded with days following due to the horrendous side effects. I wish this pill had been around back then. Thankfully Josh , unless the 240 does a number on me down the line, you’re a very lucky man. Thanks for sticking around through this all. I know I give you options sometimes, but you never take me up on them. I love you for that.

I know I always said I would never go on these drugs. Or at least never give them a chance again. I’ve had some pretty strong things to say about them. And while things are going well with this oral drug, I’m still having reservations. With the rate my eyes are having problems(and for a writer, losing the ability to see is up there with death), I know I had very little choice. It’s been 25 years for me. And I’ve come off lightly compared to so many I’ve come to know and care about. There are just times I don’t want to put my body through the push and pull of the medications. However, if this keeps going the way it has then I’ll keep going. I want to see my kids grow up, and being the tough broad I am, I’m not giving up now. I’m going to stick around for another 40 or so years. That’s my goal. And I don’t give up, or let go, easily.

Before I go, I must say thank you to my new friends from this group. They’ve really helped me through the last two weeks. If it weren’t for them I may have chickened out and not taken the damn pill. Plus I’ve realized it’s nice to know that there are others out there who feel the way I do, and I’m glad to have them as my friends, current and future.

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